Morphine in hospice care

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My PD husband is on home hospice. For the past week he has been refusing food, eating very little. He has been taking a little liquid. The hospice nurse has been giving him a small dose of morphine when she thinks he is in discomfort. Now she wants me to give it to him on a regular basis whether he exhibits pain or not. She says she wants him "evened out." I don't have a problem with morphine when he is obviously in pain, but when he is sleeping comfortably, what is the point? Anyone have any experience with hospice end of life and morphine?

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Morphine is routinely given in when there is no chance of recovery. When my son was brain dead in February, they put him on a morphine drip. I have mixed feelings about it; it suppresses respiration and the patients don't linger as long.

I feel your sadness.

Dianne

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Dear Genden: I am so sorry for your pain. When my dear sister-in-law was terminal with breast cancer, she was given morphine whenever she seemed uncomfortable. It was more for us, watching her, I believe, than it was for her. I saw the same thing happen with my mother, when she died. Although it is true that morphine can depress respiration, used carefully it is a wonderful drug for relief of pain and anxiety. In my experience, once the person stops eating, there is about two weeks left and I suspect you are nearly at the end of your dh's pain and suffering. But yours will continue; You are in my thoughts and prayers. Adrienne

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Thanks Diane and Adrienne for your comfort and support. It is a hard time in many ways. He has Parkinson's dementia, so I don't believe he understands how dire his situation is. On the other hand now and again he expresses a coherent thought that surprises me. I didn't give him morphine last night because he seemed peaceful when he went to sleep. I told myself that if he awakened during the night and seemed restless or in pain I would give the morphine, but he slept through the night. He has eaten a few spoonfuls of mashed pitatoes and some juice today but that is all. He began losing weight a year and a half ago. The weight loss seemed to happen even when he was eating nourishing meals. I doubt if he weighs a hundred pounds now. He is skin stretched over bone. He has not walked, been totally bedridden since the last week of December when his legs collapsed under him. I have tried hard to avoid bedsores, but he has one on his tailbone that is not healing---actually getting worse. A hospice nurse changes the dressing every day. My hope is that when the inevitable passing comes, it will be peaceful and painless. It has been a long journey for both of us.

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My husband had PD for over 30 years. When he stopped eating and told me he was tired of fighting as well as having stomach problems,hospice began the morphine. It took about a week for him to pass. It was a blessing to him and his family.

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tedybrs, so sorry about the loss of your husband. Since your husband was sound of mind enough to make a decision, it took the pressure off of you. I am happy for you both that he passed peacefully and with dignity on his own terms.

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This form of slow death is torture. I'm so sorry Genden. My mom is skin and bones now too but that's due to C-diff which really knocked the life out of her. I hate this process of life and death. It's really not fair. Tedybrs - sorry about your loss.

Edited July 12 by miracleseeker

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Thanks Diane and Adrienne for your comfort and support. It is a hard time in many ways. He has Parkinson's dementia, so I don't believe he understands how dire his situation is. On the other hand now and again he expresses a coherent thought that surprises me. I didn't give him morphine last night because he seemed peaceful when he went to sleep. I told myself that if he awakened during the night and seemed restless or in pain I would give the morphine, but he slept through the night. He has eaten a few spoonfuls of mashed pitatoes and some juice today but that is all. He began losing weight a year and a half ago. The weight loss seemed to happen even when he was eating nourishing meals. I doubt if he weighs a hundred pounds now. He is skin stretched over bone. He has not walked, been totally bedridden since the last week of December when his legs collapsed under him. I have tried hard to avoid bedsores, but he has one on his tailbone that is not healing---actually getting worse. A hospice nurse changes the dressing every day. My hope is that when the inevitable passing comes, it will be peaceful and painless. It has been a long journey for both of us.

My husband has gone from 190 to 132 in a short period of time. So far, he still eats OK, but I agree with you Genden -- it seems like he is still losing weight even with a reasonable amount of calorie intake.

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Oh how difficult it is to watch those we love suffer. I hope sharing the pain and knowing you're not alone helps provide relief, thank you for sharing. I'll admit that I'm a "thinker" in my approach to the continuum of life into death and I have experienced plenty of both during my journey so far. Two of the closely experienced deaths were eased by morphine and I am grateful for that.

My father suffered a stroke, then c-diff, then a burst aortic aneurysm on his spleen, and had a feeding tube provided during the spleen surgery, all in the course of 3 months. I've never seen anyone fight as persistently and gracefully as he did, but after all the insults his body endured, he asked me to ask his doctor (Dad didn't speak much after the stroke, but we communicated just fine nonetheless, we were similarly "wired" that way) what quality of life he had to look forward to if he beat the latest insult. That answer was already known, what Dad was really asking was for us to let him go peacefully. My Mother-in-law's last four months were differently endured, but similarly ended.

If you have a chance read "Being Mortal" by Atul Gawande. It's not depressing, quite the opposite, it's empowering and thoughtfully written. Use your experiences and the insight gained therefrom to help guide your own journey and just as importantly help your friends and family enjoy and respect this journey with you. One of the greatest gifts our loved ones can provide is sharing with us their hopes, fears, the compromises they're willing to make and their wishes; preferably before debility occurs to the point of not being able to think and communicate these thoughts. DH and I have begun these discussions in the effort to "put that planning in place" (long ago we prepared our wills and advanced directives etc. but with PD there is more to think about as you all know). Our goal is to focus our energy on the pursuit and enjoyment of worthwhile living while being realistic and practical about the fact that death is a natural end to that process. I also have a soon-to-be 93 year old Mother and my goal is to make sure she too pursues purpose and enjoys every one of her remaining days with the hope that there are thousands more of them to come.

Be gentle with yourselves. Don't second guess your decisions and don't deny or fight your feelings. These are an important part of your reality and your journey. Try to find an uplifting thought/feeling/experience a few times each day, however fleeting. I send you peace and reflective joy throughout each day.

Hugs.

LHG

Edited July 12 by Lonnise

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So sorry for you to go through this. Evening out the Morphine means that lower doses can be used since the pain will not start. When you give a dose it goes up really high and then if you don't give it the level in the blood drops to where it doesn't work and then pain is experienced and a higher dose has to be given to stop the pain. It would help if I could make a graph to show you what happens, but it makes a lot of sense to me to give smaller doses consistently.

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I have several experiences with morphine at the end of life. You know your husband, you love him, your decisions are correct. My experience is with my father, mother, and good friend. Cancer, emphysema, and PSP. Morphine is wonderful for extreme pain, and very helpful for discomfort and agitation. That is where knowing the person comes in. If he seems uncomfortable (bedsore) or restless/agitated, a low dose can be a very good thing. It is hard, because you end up second guessing yourself all the time. Don't fall into that trap. I used to judge it by how deep the sleep, and what was waking mood. If sleep was too deep, and waking was grumpy (facial expressions) then I used less. If sleep was light, broken, and waking was uncomfortable, I used a little more. Morphine can suppress breathing, but that is at a higher dose than normal, so not often a worry unless he has a chest cold or some form of pneumonia. The nurses are great at discussing this, so I encourage you to bring this up honestly with them. I hope this helps, I wish I could actually do something to bring you comfort and respite.

I will continue holding you in my thoughts at this sad and exhausting time.

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Thanks everyone. Just an update. DH had a high fever and seemed in pain. The hospice nurse's solution was morphine, but I was hesitant. She said pain and fever is normal for end of life. The aide and I made a discovery. He actually had an infection that had probably been brewing for a while--epididymitis--which likely came from a UTI. A very painful infection. A course of cipro stopped the infection. The fever and pain are gone and he is eating again. Morphine can mask treatable problems. He is still bedridden, profound dementia, but the last few days he has been enjoying produce, his favorites, corn on the cob if I hold it for him and rotate it, watermelon, and peaches off our tree with ice cream. He may make it for the tomatoes, cantaloupe and plums. I am tired, but carrying on with the tasks.

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I spent some time in the hospital and then with our local home hospice group when I developed a life-threatening infection after a major surgery. I was given Dilaudid every 4 hours, and at the time, I saw it a godsend. Took away all the pain, anxiety, fears, etc.

I would not hesitate to do the same for a loved one that was suffering.